Heart Warrior Wednesday: Ben

May 25, 2016

Ben was born via emergency csection four days after his due date. The one thing I hoped for him is that he’d have a bit of weight on him to set him in good state for surgery we knew he’d need at some point. After a struggle getting him out and the surgeon laughing and said he looks like he was ready for scale, he was finally put on the scales and we were told he weighed a whopping 10lb 11oz! He also had sats of 100% and was feeding well.

After a week in NICU and SCBU we were allowed to take him home and they told us he’s doing so well he’s need elective surgery at 9-12 months old! Within a week of having him home, Ben started having blue spells. He had six spells and eventually he was admitted into a local cardiac centre with a view to doing surgery. After the multidisciplinary meeting it was decided he would be put to the top of the emergency surgery list (probably had something to do with his sats being consistently in the low 50s).

He had his full repair done at 8 weeks old in December 2013. We spoke to the surgeon afterwards and were told the surgery had gone well. We spent the night expecting the phone to ring to tell us something had gone wrong. When we woke the following morning we were very optimistic thinking he was over the worst.

We walked to his ICU bed space to see him moving around, his sats and heart rate started dipping and they said it was just because they were doing a blood gas. Next thing I remember is alarms going off, doctors and nurses rushing to his bed side and other parents being sent away from their child’s bedside. We were sent to the parents room to await further news. In a daze I walked out of the room and back to his bedside to see the doctors performing CPR. He looked like a little rag doll on that bed, not moving or responding.

In the blink of an eye there were surgeons in their gowns, instrument trays and a big scary machine around him. Seeing him at thy very moment I thought he was dead, I thought we’d said out last good bye to our son. We were moved into what we called the “bad news room” waiting for someone to tell us there was nothing they could do. What felt like a life time later, the surgeon came into the room and told us he was ok! I’d spent the last hour or so wondering why God would be so cruel to realise that he’d been listening to my prayers all along! We were told that after 15 minutes CPR he still had no cardiac output and as a last attempt he was put on an ECMO machine which took over the function of his heart and allowed it to rest. They didn’t know why he’d gone into arrest but said that he had a residual VSD that they thought was insignificant. Because of the extent of the cardiac arrest we were told there was a high likely hood he would be brain damaged. The drugs were slowly weaned, and other than going through withdrawals we started to see that maybe there was a chance Ben wasn’t brain damaged!

After 12 days on ICU Ben was transferred back to the cardiac ward. We could tell he was working extremely hard to breath and when we asked the nurses they told us that must be his new way of breathing post repair!! Ben had a few funny turns where he would go purple and mottled. He was constantly needing oxygen to keep his sats within normally range. They had to put him on optiflow to help too, I think at this point they started to question whether the VSD wasn’t so insignificant after all! Because of the struggle he was facing he was started on Captipril. He hit every complication we were told about; he had a chlothorax and had chest drains in for three weeks, the chest drains got infected and he contracted Bronchiolitis. It was a very slow recovery but eventually he was discharged. Bringing him home was like a dream come true considering that a month before we thought we’d lost him. Our joy was short lived as he ended up back in hospital in the high dependency ward back on optiflow with 12 litres of oxygen needed to keep his sats up. After numerous readmissions and his constant need for oxygen they decided to do a cardiac catheter.

We were told that the “insignificant VSD” was 7-8mm in size and would need surgery soon as the pressures in his lungs were just within normal range. He was still in and out of hospital and with a stroke of luck the cardiologist from Alder Hey was doing a clinic – he came to see Ben. He told us that he was in heart failure and would need further open heart surgery within a week.

Handing him over to the surgery team could quite possibly be one of the hardest things we have had to do, we were petrified of the thought of getting our baby back. Unlike last time though, Ben bounced back! He was extubated and had chest drains removed next day and was at home less than a week later! He hasn’t looked back since. If it wasn’t for his zip(s) you would never know that he had such an epic battle to stay alive. He is now 2.5 years old. He knows about his special ticker and knows that the doctors and nurses saved his life. To date Ben has raised over £25 for Alder Hey hospital and only yesterday he completed a sponsored 3k walk for them. I’m a true believer that things happen for a reason. Ben has made us stronger.

Ben has made us stronger and thankful. I can’t believe how much I look up to someone who is half the size of me. He really is a miracle along with all the other Tetralogy of Fallot heart warriors out there.

Thank you so much Carrie, for sharing Ben’s story! I’m so glad he is doing so well!

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About Love From Ruby

Love From Ruby was started in an effort to collect and donate items to families whose hearts are breaking and need a bit of comfort. Whether from emotional surgeries endured by their child, long hospital stays, or saying goodbye all too early, this is our small gesture to show we care. Thank you for stopping by! Read More…